I have been on 150mcg levothyroxine constant since January 1st this year. Around the 20th February I started with shortness of breath and irregular heart beats which have continued daily and my t4 and tsh have gradually got better to where last weeks blood test show they are now within range. I am adamant that the levothyroxine are causing my symptoms and want to know does anybody know if there's anything else I can take for my underactive thyroid that works better without any or as many side effects. Thanks
Levothyroxine side effects: I have been on 150mcg... - Thyroid UK
Levothyroxine side effects
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Andrew36
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Hi Andrew
More experienced people than me will reply to you but to start.
What's your diagnosis? Presumably you started Levo on a lower dose and built up? What are your results for Thyroid Function tests and the normal ranges for your lab?
It could be your T3 and T4 are in range but high (' normal' covers 95% of the population) and you just need a small reduction. That might be too simplistic.
H
Hi hollins sorry for the late reply. Come to think of it I think the doctors have always been a bit vague when telling me why my tsh is raised but my last appointment with an endo resulted in him telling me I have the gene for hypothyroidism as my nanna had it . I got diagnosed in 2010 and have been up and down results wise for many years and I have had spells where I have been non compliant with the medication and weirdly enough when I look back at times when I know I had not been taking my levothyroxine some blood results are normal and some have raised tsh. Only recently (last couple years around pandemic time my tsh shot upto the 80s and the reason for that was I was been compliant and taking the dose I was supposed to and I was getting symptoms of overactive thyroid and a blood test confirmed it and so instead of reducing the dose slightly I stupidly stopped taking it for a couple of weeks and when I had another blood test 8 weeks later my tsh shot up in to the 80s. This time round I had a day or two here and there over Christmas where I didn't take my levothyroxine but since January I haven't missed any and the latest results were ; tsh 5.67 miu/l ( 0.38-5.5)
T4 15.6 pmol/l ( 10.0 -18.7 )
T3 5.7 pmol/l ( 3.5 - 6.5 )
Thanks 👍
Yes, lots of people are adamant that it's the levo causing their symptoms but it usually turns out their FT3 is too low. It's not just about getting TSH and FT4 in-range. It's a) about where in the range they fall, and b) whether your converting your T4 to T3 enough to get your FT3 in the right place.
T4 (levo) is a hormone. Hormones don't usually cause symptoms. However you could be reacting to one of the filler/excipients in the pill. Have you tried different brands to see if there's one that suits you better?
As to taking something else, there is NDT, but that contains T4, too. So, if you really can't tolerate T4 - and some people can't - that would not be an option. Which just leaves T3 only. Which, due to certain difficulties, should be a last ressort treatment.
You do need to give levo a fair chance before deciding it's not for you, and you've only been on it for five months. That's not long in thyroid terms.
And, you need to get full thyroid testing - including FT3 - to see how well you convert. It would be rather premature to try sourcing T3 before even know what your FT3 level is. 
Hi greygoose thanks for the reply .I have considered changing my brand of levothyroxine as I have been on the same brand consistently since January and I did wonder if trying a different brand may help as before when I consumed teva brand I don't think they sat right with me I am considering asking the doctor if I could change from 150mcg to 125 mcg to see if it helps. Thanks 👍
I am considering asking the doctor if I could change from 150mcg to 125 mcg to see if it helps.
tsh 5.67 miu/l ( 0.38-5.5)
T4 15.6 pmol/l ( 10.0 -18.7 ) 57.73%
T3 5.7 pmol/l ( 3.5 - 6.5 ) 73.33%
Those results are weird. Your TSH is saying that your under-medicated, yet your FT3 is high-ish - higher than the FT4. Makes it look as if you're converting T4 you haven't even got! You don't take any T3, do you?
How long was the gap between your last dose of levo and the blood draw?
Sorry I just got confused , so the results are my latest blood results and I had that blood test at 7.02 and my previous dose before that was the morning before around 7am so 24hrs earlier
Well, I replied to your last post anyway. lol I would just repeat that if you don't always do your blood draw in the same way, you cannot compare the results. So, a bit pointless to keep testing.
OK, so that last test was pointless: your TSH would have been almost at its lowest, and your FT4 would have given you a false high.
TSH varies throught out the day, being at its lowest point around midnight, the dropping slowly until about 9 am, and then dropping sharply to its lowest at around midday. Then, it starts to rise again.
So, in order to be able to compare results, we recommend always having the blood draw at the same time of day, for every test - preferably before 9 am - and leaving a gap of 24 hours between the last dose of levo and the blood draw. That way, you get the highest TSH and your normally circulating level of FT4
This is what's confusing me because my t3 and t4 have always been in range apart from going slightly over a couple of times due to the dose I was taking but its always the tsh that's up and down.
I don't see anything confusing in your TSH, and doubt you have a pituitary problem. What you should be confused about is that high FT3 because I can't see any explanation for that.
So my last blood test was done at 7.02 with the results above , the test before where my tsh was around 12 was done around 2.30 in afternoon , so can I just clarify which one you mean is pointless lol just so I know how to move forward
Your TSH was 12 at 2.30 pm? Wow! lol Well, that was high. But it would have been even higher before 9 am.
The main problem with that test was that you took your levo too close to the blood draw. So, we don't really know what your FT4 really is.
As I said above: So, in order to be able to compare results, we recommend always having the blood draw at the same time of day, for every test - preferably before 9 am - and leaving a gap of 24 hours between the last dose of levo and the blood draw. That way, you get the highest TSH and your normally circulating level of FT4
That is how to move forward.
Your last post almost a month ago you say bloods were done at 2pm and you took your levo at 7am the same morning? Test must be done first thing in morning with no levo 24 hours before.
Hi sovietsong I read after that last blood test about doing the blood test early morning with no levo until after the blood test and so I pleaded with the doctor to re test me and to my surprise he did. Its a good job because the blood test before where I had my blood test done in the afternoon my tsh was raised as I posted a month ago and they were considering raising my dose on a morning so I need to make sure I request a morning blood test everytime now. Thanks 👍
SlowDragonAdministrator
Do you always get same brand levothyroxine at each prescription
Do you normally take levothyroxine waking or bedtime
What vitamin supplements are you taking
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Hi slowdragon. I have gotten the same brand of levothyroxine for the last 5 month now . I always take my levothyroxine upon waking .I had a while taking b12 complex and vitamin d 4000 iu. But not for the last 2 and half to 3 months because when I started having heart palpitations and shortness of breath I didn't know what could be causing it so I stopped everything apart from the levo and the symptoms have continued. Weirdly enough as the t4 has risen from taking levothyroxine and the tsh has come back within range the symptoms have been constant daily so it has to be either the levothyroxine brand or the levels of t4 in my blood surely? Can I ask what you mean when you say about not having levothyroxine 24 hours before test and before 9am you say this gives us the highest tsh and lowest t4 results. I'm confused by it not because of you but because I struggle to get my head round what is high and what is low. So for example my tsh on this blood test was 5.67 24 hour after taking my last dose and test was done at 7.02 am where as my previous blood test around the beginning of April this year was 12.35 and t4 16 and these were obtained around 2.30 pm and I had my usual dose of 150mcg the same morning. Sorry to be a pain but can you explain to me please about it giving the highest reading for tsh and lowest for t4 because unless I'm working it out wrong or the doctors are fiddling with my results it seems like having the test when I'm not supposed to is giving me the results it's supposed to , p.s I'm a bit slow so maybe I'm overthrowing it or it's just staring me in face but if you could help me see it right I'd be forever grateful . Thanks 👍
24 hour after taking last dose levothyroxine and test was done at 7.02 am
tsh 5.67 miu/l ( 0.38-5.5)
T4 15.6 pmol/l ( 10.0 -18.7 )
T3 5.7 pmol/l ( 3.5 - 6.5 )
So you have been on 150mcg at least 8 weeks before test and always the same brand levothyroxine
Are you definitely taking your levothyroxine everyday (recommend a weekly pill dispenser to make remembering much easier)
Are you taking levothyroxine on empty stomach and only water to drink for at least an hour after and no other medications or supplements within 2 hours
Some medications or supplements at least 4 hours away - eg testosterone, vitamin D tablets, magnesium, iron etc
Have you had testosterone levels tested
Being hypothyroid can lower testosterone
goodrx.com/conditions/hypot...
palomahealth.com/learn/hypo...
thyroidpharmacist.com/artic...
On Levothyroxine we should aim to have TSH below 2 ……so your results suggest you need dose increase in levothyroxine
Free T4 (fT4) 15.6 pmol/L (10 - 18.7)
Ft4 64.4% through range
Free T3 (fT3) 5.7 pmol/L (3.5 - 6.5)
Ft3 73.3% through range
Your results show very good conversion rate of Ft4 to Ft3
You likely need small dose increase in Levo
Try increasing levothyroxine to 162.5mcg per day
Or 150mcg and 162.5mcg on alternate days
Obviously extremely important to maintain OPTIMAL vitamin levels
When did you last test vitamin D, folate, B12 and ferritin
Yes same brand almus 150mcg every morning for 5 month give or take a week or so . Yes I take with water as soon as I get out of bed around 7am but I tend to only wait about 30 mins before a cup of tea. I shall try the 60 minutes before my morning brew. I usually take any vitamins around lunch time or with my main tea time meal . I have had my testosterone levels checked numerous times and they are always very low end in fact I had 2 blood tests show 12 and because the next one with an endocrinologist moved up to 13 he refused to treat me . My latest vitamins tests were Ferretin 54
B12 395
Serum 25 hydroxy vitamin d 84.3
My latest vitamins tests were
Ferritin 54
B12 395
Serum 25 hydroxy vitamin d 84.3
No folate result?
How much vitamin D are you taking
B12 too low
Ferritin too low.
Folate 19.6 ug/l
Hi I have spoke with doctor and they are insistent on not treating me to raise my ferretin level. They won't do a full iron panel but said if I wanted to take a daily iron supplement then I could. My response was why if they say I don't need it plus how do I know how much to take if I can't have a full iron profile done . I'm a bit deflated trying to get them to listen and I am currently 3 days in to a daily dose of 20mg ferrous blycinate hoping it will raise my ferretin but not raise my hemoglobin so I can hopefully get rid of my shortness of breath and heart palpitations. Any advice please
NHS only tests and treats vitamin deficiencies
Down to you to maintain OPTIMAL vitamin levels
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Highly effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Difference between folate and folic acid
healthline.com/nutrition/fo...
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
Post discussing different B complex
healthunlocked.com/thyroidu...
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
helvella.blogspot.com/p/hel...
That's going to take an hour to get my head round . Thanks though
Basically
Start daily separate B12 after breakfast
Week later add vitamin B complex
When you retest ….remember to stop B complex 5-7 days before and take a separate methyl folate instead…..and continue B12
I would look into fillers perhaps that might be causing you to feel the way you feel. If the Levo 150mcg is showing good lab results. I would change to another brand and have the vitamin levels checked. Vitamin B-12/Folate, vitamin D, Iron/Ferritin. Best wishes.
Hi jgelliss thanks for the reply. I feel like my levels have gone above what my body is comfortable with if that makes sense as my t4 always seems to be in range but on the high side and I feel like I have energy lately that feels well different to how I've felt for years with the typical hypothyroidism symptoms of fatigue etc. So I think it may just be I'm in need of a small reduction in dose. Thanks 👍
I am sure that's what's happened to me but first check you're not getting symptoms from the actual brand if tablets. Teva was bad for me but there is a list if you search on here of brands and their ingredients. Once you find one that suits you you may be fine. If not then you should check if you're a poor converter.I found Paul Robinson's website and books very helpful indeed.
Hi maztee thanks for the reply. I also had teva brand a few years ago and had some horrible side effects so I'm on point considering that . I feel like the brand themselves are working great as I am feeling really good apart from the heart palpitations and shortness of breath so I'm thinking maybe a small reduction . Thanks 👍
Would dosage or brand of Levo would have anything to do with it? Anyone?
Hi sharoosz I think the dose could be responsible and I am going to talk with my doctor about a dose reduction thanks
You high TSH suggests that you are not on high enough dose levothyroxine
Which brand of levothyroxine are you using
You could try splitting the dose levothyroxine
Taking 100mcg waking and remainder at bedtime
Breathlessness is frequently low iron/ferritin and very common when on inadequate dose Levo
Request full iron panel test including ferritin
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Stop iron supplements 5-7 days before testing
Medichecks iron panel test
medichecks.com/products/iro...
aiming for ferritin at least over 70 minimum
My latest ferretin was 54 ng/ml ( 22-322) , how do I increase my ferretin please. I have been thinking my irregular heartbeat has been because I have too much t4 and so I was considering reducing the dose but do you think I should increase. Could my tsh be because of my gut ? But then would the t4 struggle to absorb if I had gut issues that were effecting tsh levels ?
Low iron/ferritin can also cause palpitations
Ferritin is storage form of iron
You can’t take iron supplements without getting full iron panel test
It’s possible to have low ferritin but high iron
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If/when on iron supplements Stop 5-7 days before testing
Medichecks iron panel test
medichecks.com/products/iro...
Meanwhile
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
irregular or ectopic heart beat can be due to being on inadequate dose levothyroxine
Do you wear a fitness tracker
One that can record ECG can be especially useful for recording intermittent ectopic beats
Also fitness tracker helpful to record low resting heart rate at night
I have one yes and it does record a low resting heart rate at night around 58 beats per minute
Hi guys thanks for the replies , I am going to get round to answering all of your questions today one by one
SlowDragonAdministrator
I would guess your hypothyroidism is autoimmune
Looking at previous post here a year ago
Suggest you reread replies carefully
healthunlocked.com/thyroidu...
Vitamin levels were inadequate a year ago and I gave you details about trialing strictly gluten free diet. Your endoscopy suggested likely gluten sensitivity
Are you now on absolutely strictly gluten free diet?
Ferritin was too low a year ago and quite likely lower now and could be cause of breathlessness
Folate, B12 and ferritin levels need retesting at least annually
Vitamin D twice year
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Graph showing median TSH in healthy population is 1-1.5
web.archive.org/web/2004060...
Comprehensive list of references for needing LOW TSH on levothyroxine
healthunlocked.com/thyroidu....
onlinelibrary.wiley.com/doi...
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
I am doing well with the gluten free meals but I am not 100 % free and I could do better , I go in waves of doing really good but then end up eating some pasta bake that I make the kids or some pizza , but we have started the last 6 months getting more gluten free foods in like bread pasta and even gluten free jars of cooking sauces as well as keeping on a more meat veg and fruit diet but I can't seem to keep any sort of consistency , but the amount of gluten and the foods I was eating 1 year ago compared to now even though there is sometimes little bits of gluten is very good comparing to last year. I very rarely have any frozen food or packaged food. I really appreciate your replies and knowledge thank you
Gluten free pasta is excellent
It does have to be strictly gluten free to be effective
Yes it does take a bit of forward planning
Lots of places do gluten free (and dairy free) pizza
SlowDragonAdministrator
Suggest you increase dose levothyroxine as outlined and retest in 6-8 weeks
Meanwhile restart vitamin D at say 2000iu daily
And a week later restart daily vitamin B complex
Request GP do full iron panel test, or get tested via Medichecks
Thyroid testing
Have you ever had thyroid antibodies tested for autoimmune thyroid disease also called Hashimoto’s
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Hi guys just a quick update , one thing I notice when I am having my thyroid medication in a morning is that within about 20 - 30 minutes I Start having like heart flutters that tend to not last long but do come intermittently throughout the day and I am convinced its with having the levothyroxine dose that I am on , so I had myself a little experiment, I haven't had my levothyroxine for 2 days and although my shortness of breath has still been present I had no heart palpitations, this morning I get up and have my levothyroxine dose at 100mcg instead of 150mcg and within 20 minutes I am having the heart flutter , now my heads a mess because even though I am getting these serious symptoms I feel the best I have felt in a long time so I don't want to stop my levothyroxine but on my levo leaflet it states that short on breath and heart palpitations are serious side effects but yet when I mention this to my doctor they are saying its anxiety, but I know it is related to the dose / brand of levothyroxine. Now my issue is do I reduce my dose of levothyroxine but then my t4 drops and my tsh rises ? For anyone thinking I need an increase I really don't think it's that because I have had long periods in the past where I wasn't taking my levothyroxine properly even to the point of having normal range t4 and t3 but 85.6 tsh and I didn't have shortness of breath or heart palpitations then. To me I have too much of a dose . Sorry for the long post and thanks for taking the time to read .
Does anyone know can I just stop the levothyroxine for a week or so to see if these symptoms do clear up and then re start the levothyroxine again ?
Stopping and re-starting can cause issues.
We have seen numerous members say that they have done something similar and have ended up finding it difficult to re-establish a stable dose.
Changing from a full replacement dose to none, then back, can turn your endocrine system upside down.
It is far more reasonable to drop a little and stay there for a while. Then see if you can tolerate an increase - slowly, with small increments.
So say go to 100mcg for a while then go 125mcg then 150mcg. " for example " instead of stopping all together or instead of going 100mcg for a while then straight to 150 mcg
Maybe. Or 100 to 112.5 to 125 to 137.5 to 150.
Don't try to make a hard prediction of how much or how fast. It's fine to make a sketch of what you think will happen, make sure you have a suitable stock of tablets to achieve that, draft a timetable even. But don't make keeping to that plan an aim in itself.
See how it goes and adjust and adapt over time and with experience.
And my suggestion of dropping to 100 is simply a number plucked from the air. Significantly less than you are on but not so low as to be entirely without merit. Maybe you could choose 112.5? Maybe you choose 112.5 but after just three days you know it is too little and go to 125? Or something like that.
But once on the path, try not to jump around. For example, if you reach 137.5 and are feeling "almost there", then be very slow in raising to 150. Let your body get really used to 137.5.
And make notes every day of how you are feeling.
I've purposely ignored the comments above - many of which are very thoughtful and from experience. I'm trying to focus on your specific question about laying off levothyroxine altogether for a while.
Sorry to use a militaristic quote but I couldn't quickly find a "civilian" version:
No Plan Survives First Contact With the Enemy
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